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It began on a dreary Monday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense sensation erupted behind my right eye. This was followed by quick shocks, reminiscent of lightning bolts. As the school day progressed, the pain subsided and then returned with increased force. Four times that day I left a teaching assistant with worksheets and ran to the school bathroom to douse my face with cold water. I tried paracetamol, but the pain remained unbearable.

The headaches returned frequently that fall, and once more in spring, soon forming an yearly cycle. September and October were the most severe, then the late winter. I could predict the pattern: a warning sensation in the morning, early pangs on the train, full-blown pain in the classroom by mid-morning. In 2019, a GP finally sent me to a neurologist and I was given a diagnosis with cluster headache disorder.

Cluster headaches often start with severe discomfort behind a single eye that persists for three hours.

About one in 1,000 individuals are affected by the condition, and males are more frequently affected. Attacks usually start with sudden, severe pain around a single eye that peaks within a short time and lasts for as long as three hours. Episodes occur in cycles, daily or multiple times a day, and are accompanied by tearing eyes, sagging eyelids or face perspiration. I have an episodic type, which arrives in seasonal bouts; others have continuous cluster headaches, characterized by the lack of long symptom-free periods.

What unites sufferers is the severity. One research paper rated the pain at 9.7 10, higher than broken bones or pancreatitis. A separate found 64% of cluster patients experienced thoughts of self-harm amid bouts; the figure fell to 4% when they were pain-free.

Val Hobbs, 74, a chronic patient from Pembrokeshire, isn't surprised. Her episodes began when she was a toddler. “I would hurl myself on the floor and bang my head. That was put down to being spoiled,” she says. Her symptoms deteriorated through her youth. Drinking in her teens, like several triggers, made things worse. After drinking sherry at her school leaving party, she recalls barely being able to see on the bus home.

Her relatives often mistook her attacks as drunken episodes. Understanding finally came from her father and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often hid her illness. She was dismissed from one job, partly due to time off during episodes. Her breakthrough identification came in the early 2000s at a national neurology center.

Still, the failure to organize daily activities around unpredictable pain took its effect. She particularly disliked being unable to plan social events, being seen as flaky as a colleague, and even having to be looked after by her children during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't appreciate until they're gone,” she says. She recalls obtaining tickets for a significant concert, only to have an episode inside a facility.

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Headaches have been described across the ages. “The first account of headache comes by way of the Mesopotamians in antiquity,” write experts in a book on the topic. They linked the disease to an evil spirit who attacked his victims' heads.

Historical healing records suggest unusual treatments for what modern experts would describe as a migraine. In the middle ages, severe headache was identified as a distinct condition, with therapies including bloodletting to other, more folk remedies.

It was a European physician who provided the first detailed description of a cluster-type attack. In his writings, he speaks of a patient “suffering with a very intense headache occurring and vanishing each day at fixed hours”.

The disorder were only officially classified by international headache societies in 1988. From the 1960s to the 1990s, they were believed to be caused by a issue with a key artery that supplies blood to the head. Prominent specialists in diagnosing the condition explain this.

In 1998, researchers published the findings of a research project for which they had triggered attacks in patients and monitored the episodes in a imaging machine. The results, featured in a prominent medical publication, showed increased activity of the hypothalamus, which is in charge for human circadian rhythm, when patients were in pain, and a reduction when they recovered.

Despite such advances, diagnosis remains delayed. Jamie Charteris's attacks began in 1986 and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had four surgeries before finally being correctly identified in 2014, after a doctor looked up his symptoms.

Neurologists say delays in diagnosing and treatment occur because patients are rarely seen mid-attack. “You're exhausted and low, but not in severe pain,” one says. He works by ruling out other primary headache disorders, such as migraine, before confirming the disorder. A detailed history is essential: on which side do symptoms appear? For how much time? What time of year? Are there triggers, such as alcohol? Certain characteristics such as tearing, sagging eyelids and nasal congestion help confirm cluster headaches. Once diagnosed, patients may be sent to specialist centers. But a lot of first go to A&E or are given unsuitable treatments.

Dorothy Chapman, in her late seventies, has suffered from cluster headaches for most of her adult life, although she hasn't had an attack since recent years. When she was in her twenties, she had her teeth pulled because dentists misunderstood her pain. She thinks the dental profession still need much more education. When a sufferer sought help from a support group, it was she who replied. The author recalls calling a helpline during an bout in 2021; a calm volunteer talked them through oxygen therapy and medication until the episode passed.

National guidelines on management advise that sufferers are offered high-dose oxygen and/or a specific drug administered by injection. No oral painkillers or strong analgesics should be used. Preventive options include a blood pressure medication, which reportedly helps manage the bouts of some individuals.

But consultant neurologists believe the official guidelines need revising to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is critical: “The duration of the bout determines the treatment.” Brief bouts with infrequent attacks are handled with abortive therapy alone. More prolonged or more intense periods require preventative medications such as verapamil, sometimes combined with corticosteroids. A significant number of patients also receive a nerve block injection during a cycle – an injection into the area of the skull where the pain is that decreases nerve signals.

The official guidelines need revising to reflect a